Hello Justin, Teej and Lilly and others,

I just butt in, with the advantage and disadvantage that I know little to nought of the CAA, and have no feelings either way, except that they do something to get the lives of patients with ME improved. Justin wrote:

Quote Originally Posted by justinreilly View Post
I agree. I think this is an improvement on the old, but falls far short of competent. I even think some of the early stuff that Teej liked was inappropriate.

And Teej earlier wrote:

IMO the CAA is responsible for miseducating our doctors and the public. I think it's partly their fault that we're being treated like lazy malingering hypochondriacs by our doctors and family, friends and the public.

ETA: It's been pointed out to me that we were being treated like this before the CAA was even in existence but I hold the CAA responsible for continuing these detrimental perceptions of us. They are a huge part of the problem. Look at the big picture. They are educating our doctors about CFS. How can they not be responsible for this perception of us?

I suppose I am with Lily, and my reasons are these four

(1) They are probably mostly doing their best even if you disagree with them, and have a helluva job.
(2) One of their major problems is to get heard, read or seen to exist at all, by medics & media.
(3) The CAA - apart from the quality of the public information they try to get read - cannot be held responsible for educating or miseducating doctors and others: Everybody if sane is himself or herself responsible for his or her (mis)educated beliefs (if acted upon or advocated publicly).
(4) The perception of people with ME by the general public or the unclued medical doctor or psycho does not depend on patients' organisations but on the media and on standards and contents of the education they got in universities.

Often I mostly agree with Teej and with Lily (what I read of them), but I think I am with Lily here. It's mainly because of personal responsibilities for one's own beliefs and the power of the media and standard education in manufacturing prejudice, biasedness, ignorance and neglect.

It's possible that I don't like the CAA if I know more about it, but even then I think the above will hold.

(Goes back to cloggie-dreams.)

Maarten.